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Shaping our Days

Our thoughts determine our attitude, and our attitude shapes our day.

I realized during some of the toughest days at the hospital with Abraham, I felt the strongest. I credit that to hope.

On the other hand, some of the quieter “easy” days during his recovery, I found myself snappy and sad. I credit that to fear.

That proved to me that my moods, positive or negative, are due to more than the happenings of my day.

The things we brood about limit our approach to life: we remain bound and shadowed in traps held from yesterday’s pain.

Instead, if we cast aside dark thoughts, we can then bring in the light of hope. And when we have hope, it’s always a good day.

Peace, hope and light…

Trauma and Transition

The trauma said, ‘Don’t write these poems. Nobody wants to hear you cry about the grief inside your bones.’

Andrea Gibson, The Madness Vase

When a deeply distressing or disturbing experience occurs, it takes time to heal. For some, the healing takes a very long time; for others, recovery is never realized at all.

For most, sharing the experience is difficult. Perhaps, it is because we can never fully understand another person’s grief. Maybe, we are afraid to relive the nightmare.

For me, I share to put distance between myself and my circumstance. I hold on to the memories like the string on a kite, but I allow the winds of change to carry it far above me.

During Abraham’s cancer treatment, it became my job to go from appointment to appointment, managing medications, side effects and emergencies.

Now, he is no longer under the constant supervision of a team of exceptional medical professionals, and the psychological and emotional processing of all we’ve been through has begun.

When cancer treatment ends, patients and caregivers must find a “new normal” during the adjustment period. The appointments, medications and emergencies are fewer, but not ended. Only now, we are on our own to determine which aches and pains might be “normal” sick, and which ones require further evaluation for “The Big Sick.”

Just as this transition hits, friends might begin to figure the dangers have passed and we should be celebrating. We are indeed celebrating, but it is a cautious enthusiasm. The security of the hospital is hours away, and the active fighting is over. The scary part becomes the realization that our weapons are down and we are hoping the enemy- the tumor- stays away. But there is never a way to know for sure, and a lifetime of vigilant defense against a silent killer has actually just begun.

So what of it then? Do we sulk and cower? Do we live in fear of the unknown?

No, we adjust. We accept the change and grow in faith that what lies ahead is ours, and what is ours is to be lived most fully.

Peace…

Sunflower Shadows

Writing about wellness and kindness does not mean I can’t be ill-tempered or ill-humored, or even just-plain-sick. Oh, I be illin’ sometimes;)

But I prefer to feel good.

So, I choose to assess my situation, and make a mental list of the reasons I’m lucky to be alive. I start with what I love most and end with the basics like clean water (denied to many) and shelter.

Finding sunshine in the shadows begins with a desire to seek it, and being honest about our preference can take a lot of the pressure off. Sometimes the stillness and solitude of the dark is where we want to be.

After all, the real world can’t promise endless happy days. Sadness comes. What life can promise us is that when we are ready to feel the sun again, we can always find it by looking to the bright side. It’s as basic and cliché as that.

Helen Keller beautifully brought it back to nature.

“Keep your face to the sunshine and you cannot see the shadows. It’s what the sunflowers do.”

I realize being a grateful human is trickier than being a healthy flower. But if we think like a sunflower, our choice is easy; we go sunshine.

Peace and light…

At a Loss


Words cannot touch grief.

I have lost people I love dearly, but experiencing loss does not give me any special insight. All I can bring today is what I know. I know my own story. I know several families with critically ill kids, and I see them. I am them.

But then, there is loss.

What can we do when yet another family transitions from fighting to mourning? Condolences can ring hollow – especially when directed at a newly grieving family. But that doesn’t mean we shouldn’t speak. There is already enough silence in death, and we shouldn’t add to that chasm just because we can’t find the words.

We must get over the fact that we might not say the right thing; there simply is no blanket statement or correct sentiment to ease unimaginable grief. But we can do something. Send a card. Make eye contact. Make a casserole. Make a comforting noise. Make an effort to share our light and our self and our time.

Even more importantly, we must continue extending that light in the years to come. Life goes on for the observer, but for the observed, a dynamic part of the world is forever stopped.

Being afraid of death or confused by the “why’s” should not take away our ability to offer something of ourselves to those in mourning. From my perspective, I see three kind approaches: be there, be patient, and be genuine.  If we reach out with thoughtful concern, most of what we do or say will have merit.

We can’t expect to fill the void, but we can put a part of ourselves near the memory that lives on. Where there is nothing we can put something.

Our attempt may seem insignificant, but any thoughtful act can find a place inside the hollow of grief. That is the only way I know of to keep surviving loved ones from trying to exist on empty.


Peace.

Life Flies

Time doesn’t fly. Time is measured and monitored and documented and feared. Life is fleeting; life is what flies. 

Abraham is at school without me, and the nursemaid in me wants to bring him a smoothie and a cool rag or maybe some fresh socks. Tommy gave junior high a 10 out of 10 on his first day, and the mother in me (much to his chagrin) hugged him huge in Walgreens and clapped her hands in excitement. What an auspucious start to the school year!

I’ve dropped both boys off for Day 2, and I’m in the car alone. I have things to do, but I can’t seem to pull out of the primary school parking lot. And no, it’s not just because of the buses;) I’m trying to catch my breath from life whizzing by so quickly. 

Eventually, I will drive home with my heart still aflutter. I will keep checking for a text or a Kankakee School District phone number to pop up. Surely something daunting or crazy or crushing is going to happen, right? I mean, this is so normal. 

Normal never felt so unexpected. I would never wish our bumpy road on anyone, but I do wish more people could share in the unexpected joy of life’s basic but swift motions.  I can’t express strongly enough what every cancer patient and caregiver wants you to hear: stop complaining, stop ignoring and start appreciating.  Anything less is a waste.

Start Where You Are


Once again, it is time to trust the magic of new beginnings. A new week, a new school year, and a new independence for my sons – and myself – begins today.

Chris and I can’t remember the last time Abram made it through a full school day. Nearly two years, perhaps? I think he had a decent stretch of full days in November 2014. And of course, he missed the final week of Kindergarten when the tumor was first discovered.

We will take it day by day. Abram still has doctor and physical therapy appointments to keep, but our intention is to see what his body can handle and work with it.

I approach each schoolyear with a no nonsense attitude and high expectations. Out of habit, I feel my blog is reflecting my teaching style. I am fine with that. The topics on my mind right now aren’t easy to explain and until I work through the basics, I will stick with my teacher-mode voice.

Even though I continue to write in a serious tone, I am certain I will work up nerve enough to relax into a bit more humor. Trust me, I’m a clown at heart. As a child, they couldn’t get me to quit long after the joke had gotten stale. My apologies still go out to my older brother and sister; I realize now telling the punchline once is sufficient.

May the week be a strong one.

Peace…

Proton Radiation

Unfortunately, odds are that you will know someone diagnosed with cancer. If radiation is a treatment option, please let him or her know about proton therapy. Since this is one of the few advances to potentially reduce the damage wrought by conventional cancer treatment, I want to tell anyone who will take or make the time to listen.

According to the American Brain Tumor Association, “Proton therapy uses accelerated subatomic particles called protons (energized particles that have a positive charge) to send a high level of energy directly to the tumor site through a magnetically-guided beam. In proton therapy, energy of the protons – along with the depth of penetration – can be conformed to match the unique size and shape of each tumor. This helps to minimize the destruction of surrounding healthy tissue and organs and theoretically decreases acute and long- term side effects, such as neurocognitive deficits (e.g., short-term memory problems) and hypopituitarism (i.e., hormonal imbalances). This benefit is particularly important for young children who are still developing. Less damage to healthy tissue means potentially reducing the development and intelligence changes that can occur with conventional radiation. Additionally, studies show that proton therapy can also result in fewer late effects, including secondary tumors from treatment, a major concern among physicians and families when a child – especially a very young child – is undergoing radiation treatment.”

While proton therapy has been used to treat brain tumors for nearly 60 years, it has only recently been approved for use in the United States. We are fortunate to have had access to one of the few facilities administering this technology, the Chicago Proton Center. http://www.chicagoprotoncenter.com/

Long-term effects of cancer treatment are one of the prices paid for a continued chance at life. As a family, we weighed the risks, and we took them. We do not know what the future holds- no one- not even the healthiest of individuals- can ever be sure of how many tomorrow’s they will see.

A year ago, I documented a day at the Proton Center on Facebook:

“Mondays are always jam-packed for Abram: oncology doc, port access, chemo 1, chemo 2, neuro-oncology doc, and then proton treatment. His port is already accessed so the hard part is over. It will be a long day, and counts are down so I will be giving him a shot later. But, the smiles remain :)”

At times over the past year, we have felt overwhelmed with the numerous decisions included with Abraham’s treatment. Many can offer advice, but ultimately, everyone must gather as much information as possible (in a timely fashion) and choose what is best for him or her.

We made promises to return to the Proton Center and CDH after treatment was complete. With school starting next week, today was our chance to go visit. My sister picked us up, drove us up, and we made the rounds!

Here’s our first and favorite friend who showed us the chemotherapy ropes: Nurse Jenny!

So much love.

Next we stopped at our home away from home, The Ronald McDonald House.

Our final stop was at the only restaurant Abraham enjoyed during our eight-week stay, Gnarly Knots.

http://www.gnarlyknots.com/

If someone would have told me that I would return to where some of our hardest days were spent, I would doubt it being high on my end-of-summer “to do list.” But a large part of the tenacity demanded by this horrific disease took root in these hospitals and cancer centers. It was under the care and guidance of sweet souls like Nurse Jenny where our strength and hope grew. They taught us that if we watched and learned and showed up for the fight, we were tough enough to make it through every round. And we did.

Peace, hope, and strength…

 Snoopy Day

“I don’t know the meaning of life. I don’t know why we are here. I think life is full of anxieties and fears and tears. It has a lot of grief in it, and it can be very grim. And I do not want to be the one who tries to tell somebody else what life is all about. To me it’s a complete mystery.”
-Charles M. Schulz, Charles M. Schulz: Conversations

Pretty dark thoughts for a beloved cartoonist, isn’t it? Perhaps Schulz’s ability to acknowledge the grimness of grief while maintaining a sense of humor is one of the reasons he has remained relevant and inspirational for nearly seventy years.

Yesterday, I struggled amid minor setbacks. Abraham’s legs were giving him trouble, so we needed the wheelchair to get him around the hospital. It had been months since he had needed the chair. Next week, we are hoping he will return to school full time. I started to panic that he wouldn’t be ready. I worried that all the therapy and hard work still wouldn’t be enough to get him back with his friends on a regular basis. Then I took a deep breath, and replayed the positives in my head.

First and foremost, Abraham is happy. Second, labs yesterday were all heading in the right direction, and the thyroid panel was entirely within the normal range. Third, although the nausea did get the better of him before the visit was through, we made it home safely, and everyone slept through the night.

Once yesterday’s anxieties were back in check after counting a few blessings and getting a good night’s sleep, today blossomed. Abraham is a happy old soul who loves all things Peanuts. He and Grandma Annette have been planning a chemotherapy is over/end of summer shindig, but none of the days seemed quite right.

Yesterday was the last of his summertime hospital appointments, plus this week is Snoopy’s birthday, hence, Snoopy Day! Before we even entered Grandma’s house, Snoopy was there to greet us at the front door:


We dined on Snoopy’s favorite meal: root beer and pizza. And of course, there was cake!

I’m not sure if daily fears and occasional tears make me weak or make me human. On the one hand, I pride myself on keeping the faith, but on the other, I know the universe will do what it must. The balance between thinking positive thoughts while remaining ready to handle negatives that inevitably pop up is perhaps my chief personal dilemma. As I supplement my soul-search through blogging, I, too, don’t want to be one who tries to tell others what life is all about. My intention is to share our version of life’s mysteries with honesty and humor in hopes that readers might occasionally smile along 🙂

Port in a Storm

Abram’s chemotherapy graduation shirt couldn’t be more appropriate today. He endured a lengthy, ROUGH and painful port access.

 Accessing the port in his chest is always tricky. During the port placement surgery, the line kinked, and the doctor was forced to set it in a little deeper and at a slightly different angle. Sometimes, that makes for a troublesome access with repeated pokes to find the “sweet spot.” Today was one of those sometimes. With all of the surgeries and treatments and tests the little guy has been through, the port continues to be one of his hardest hurdles.

On a brighter side, we love Lurie Children’s Hospital; they have taken care of Abraham since our terrifying emergency room run in May 2014. The staff is talented, tireless and kind. Today was no different. The skilled nurses dealt with the stubborn port, child life kept the music and jokes coming while I held his little hand.

Currently, Abraham requires extensive monthly labs and a two-hour antibiotic infusion. The infusion causes stomach upset and nausea. He is currently fighting that back, but I can see he’s struggling. My sister is with us, and the little champ is bravely taking care of his business here in the infusion clinic.

Today, I should have been in my 8th grade classroom, sweating in the heat with my fellow staff and 100+ new students beginning the 2016-17 school year. Instead, I am in Chicago while Abraham gets the care he needs. Even as I type these words, I am certain this is where I should be-helping my son get better.

Please keep the positive thoughts headed our way as the day unfolds.

Peace, love and light…